Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
101
Every Patient Matters - Discovering, Developing...
39 min
102
Effisode - Rare Disease Day Events
4 min
103
A Rare Collection - To the Moon and Back
22 min
104
Honoring a Husbands Legacy by Finishing His Wor...
26 min
105
Effisode - Barbara Is Real
4 min
106
From Cancer Biologist to Rare Disease Mom - Dig...
28 min
107
Never Give Up - Two Decades of Struggles From D...
53 min
108
Effisode - Seizures Are Stupid
5 min
109
A Rare Collection - New Beginnings
17 min
110
Happiness Is Meant to Be Shared with Author, St...
57 min
111
Effisode - The Friendship Circle
5 min
112
Being Brave, Curious and Motivated to Help Make...
30 min
113
Care Team Prescription - The Importance of Clin...
28 min
114
Effisode - Rare Disease Day 2023
2 min
115
A Focus On Patient Advocacy - Participation In ...
36 min
116
A Rare Collection - Holiday Cheer
18 min
117
Effisode - Presents, Portraits and Beyond the D...
3 min
118
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
119
How Far We've Come - A Look at the FOXG1 Resear...
44 min
120
Effisode - Fire and Ice
9 min
121
Your Career and Personal Life Collide - Senior ...
38 min
122
A Rare Collection - Beep, Beep, Beep
21 min
123
Effisode - The List
7 min
124
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
125
Social Security Disability Revealed - Why It's ...
52 min